Unusual?

frankie402
frankie402 Member Posts: 31
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I saw my oncologist today and he said I was a very unusual case.  He said having FNHL in the small bowel last year which is extranodal and now having it come back in my groin area is very unusual. Boy I hope I got that right!  Has anyone had this and if so what was the outcome? 

Comments

  • Rocquie
    Rocquie Member Posts: 869 Member
    #2
    Unusual

    Hi Frankie, I'm not sure what you mean? I don't understand what is particularly unusual about FNHL relapsing after a year. Is it the area that seems unusual? I would say the outcome depends on your treatment. What is your treatment plan?

    Can you give us a little more information?

    Thinking of you. . .

    Rocquie

     

  • frankie402
    frankie402 Member Posts: 31
    #3
    Rocquie said:

    Unusual

    Hi Frankie, I'm not sure what you mean? I don't understand what is particularly unusual about FNHL relapsing after a year. Is it the area that seems unusual? I would say the outcome depends on your treatment. What is your treatment plan?

    Can you give us a little more information?

    Thinking of you. . .

    Rocquie

     

    Unusual

    Hi Rocquie, thanks for the reply.  You know, i'm confused also. I am having a bone marrow biopsy in a few weeks and so far it is watch and wait.  He said he is going to a conference Saturday where an expert on NHL will be speaking and he said he is going to talk to her about me.  Dr. Vose is the name.  I had FNHL exactly a year ago in the ileum of the small bowel.  This time it was found near the inguinal ligament somewhere. Here is some of the path report:    The findings indicate follicular lymphoma.  The prior study on the small bowel resection indicated that follicular lymphomas of the small intestine are systemic follicular lymphoma.  The flow cytometry study and morphology indicates this is a folicular lymphoma.  The present lymph node biopsy indicates a follicular lymphoma, however it is low grade with 1 to 2 centroblasts per high power field.  No diffuse areas are present. The present findings would suggest that this is a gastrointestinal involvement by systemic follicular lymphoma and it is noted that the present sections of the lymph node have a lesser centroblast count but both lymphomas are still low grade.  

    Here is some of the Clarient flow cytometry study:  An abnormal B cell population with co-expression of CD10 and negative light chains is detected in this analysis.  These findings are suspicious for involvement by a CD10+ B cell lymphoma. The differential diagnosis includes follicular, Burkitt, diffuse large B cell, lymphoblatic and other rare B cell lymphomas. As such, additional analysis for TdT expression will be attempted to exclude lymphoblastic lymphoma and an addendm will be issued.  

    Addendum:  The abnormal B-cells don't express CD34 and TdT which speaks against a B-ALL.  The pattern is consistent with a follicular lymphoma.  Burkitt, diffuse large cell or lymphoblastic is not suggested.

    So that's what is reads, so sorry it's so long. I hope it is what was needed for the understanding of my question.  It goes right over my head!  Thank you and I plan on reading your blog!  Frankie  

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #4
    Rocquie said:

    Unusual

    Hi Frankie, I'm not sure what you mean? I don't understand what is particularly unusual about FNHL relapsing after a year. Is it the area that seems unusual? I would say the outcome depends on your treatment. What is your treatment plan?

    Can you give us a little more information?

    Thinking of you. . .

    Rocquie

     

    Unusual...

    Hi Frankie,

     My doctor told me that a relapse can happen at anytime and come back in any part of the body...including the same places it was first located. I had tumors in 4 locations...groin, stomach, neck and jaw. All of the tumors shrunk after first line chemo and 2 years of maint Rituxan therapy. I asked how long he was going to keep my port in and he said as long as it keeps working and I have no problems with it. It's not at all unusual for our kind of cancer to come back, and as my doctor said, it's more likely to than not. Take care and keep us updated on your situation. Best wishes...Sue

    (Follicular NHL-stg3-grd2-typA-Dx 6/10-age 62) In remission. 

  • frankie402
    frankie402 Member Posts: 31
    #5
    allmost60 said:

    Unusual...

    Hi Frankie,

     My doctor told me that a relapse can happen at anytime and come back in any part of the body...including the same places it was first located. I had tumors in 4 locations...groin, stomach, neck and jaw. All of the tumors shrunk after first line chemo and 2 years of maint Rituxan therapy. I asked how long he was going to keep my port in and he said as long as it keeps working and I have no problems with it. It's not at all unusual for our kind of cancer to come back, and as my doctor said, it's more likely to than not. Take care and keep us updated on your situation. Best wishes...Sue

    (Follicular NHL-stg3-grd2-typA-Dx 6/10-age 62) In remission. 

    Unusual

    Hi Sue, thank you so much for replying.  I don't think the fact that it came back is the question even though I know the way I posted up top looks like it is, I think maybe it's the way it has presented itself or the lymphoma found in the groin looks different I don't know.  I thought when I was leaving his office I understood until I got to thinking that couldn't be right. I wanted so bad to call his office today to ask a nurse to explain it to me again but was to embarrassed to call. So I guess I will wait until I have my bone marrow biopsy and ask him then.  I will let you know how it comes out!!  I am so happy for you that you are in remission!  God bless, Frankie

  • Shoopy
    Shoopy Member Posts: 210
    #6
    frankie402 said:

    Unusual

    Hi Sue, thank you so much for replying.  I don't think the fact that it came back is the question even though I know the way I posted up top looks like it is, I think maybe it's the way it has presented itself or the lymphoma found in the groin looks different I don't know.  I thought when I was leaving his office I understood until I got to thinking that couldn't be right. I wanted so bad to call his office today to ask a nurse to explain it to me again but was to embarrassed to call. So I guess I will wait until I have my bone marrow biopsy and ask him then.  I will let you know how it comes out!!  I am so happy for you that you are in remission!  God bless, Frankie

    Oh my...don't be ebmarrased

    Frankie,

    If you need things explained in greater detail please don't wait to call the doctor!!!

    My doctor had already told me I had DLBCL but initially was hinting it was Stage 2.  When he called me a few days later and said it was Stage 4...I was shocked.  I never completely understood why the stage had changed.  I remember him saying my marrow was not involved but there was a spot on my lung...and no other organ involvement.  I called him the next day and it turns out he 'had' to call it Stage 4 because the PET scan showed a 1cmX1cm spot on my lower right lung that 'will probably go away and might actually be a lymph node vs. lung involvement'.

    My point is that I was so glad I called him back because the bottom line is that I was borderline Stage 4 (or borderline in my mind).  My latest PET scan showed that the spot had, indeed, gone away.

    The doctors and nurses are only there to help cure us.  They are also there to explain everything to us.  So call...

    Will keep you in my prayers!

    Karl

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #7
    frankie402 said:

    Unusual

    Hi Rocquie, thanks for the reply.  You know, i'm confused also. I am having a bone marrow biopsy in a few weeks and so far it is watch and wait.  He said he is going to a conference Saturday where an expert on NHL will be speaking and he said he is going to talk to her about me.  Dr. Vose is the name.  I had FNHL exactly a year ago in the ileum of the small bowel.  This time it was found near the inguinal ligament somewhere. Here is some of the path report:    The findings indicate follicular lymphoma.  The prior study on the small bowel resection indicated that follicular lymphomas of the small intestine are systemic follicular lymphoma.  The flow cytometry study and morphology indicates this is a folicular lymphoma.  The present lymph node biopsy indicates a follicular lymphoma, however it is low grade with 1 to 2 centroblasts per high power field.  No diffuse areas are present. The present findings would suggest that this is a gastrointestinal involvement by systemic follicular lymphoma and it is noted that the present sections of the lymph node have a lesser centroblast count but both lymphomas are still low grade.  

    Here is some of the Clarient flow cytometry study:  An abnormal B cell population with co-expression of CD10 and negative light chains is detected in this analysis.  These findings are suspicious for involvement by a CD10+ B cell lymphoma. The differential diagnosis includes follicular, Burkitt, diffuse large B cell, lymphoblatic and other rare B cell lymphomas. As such, additional analysis for TdT expression will be attempted to exclude lymphoblastic lymphoma and an addendm will be issued.  

    Addendum:  The abnormal B-cells don't express CD34 and TdT which speaks against a B-ALL.  The pattern is consistent with a follicular lymphoma.  Burkitt, diffuse large cell or lymphoblastic is not suggested.

    So that's what is reads, so sorry it's so long. I hope it is what was needed for the understanding of my question.  It goes right over my head!  Thank you and I plan on reading your blog!  Frankie  

    Frankie,

    Actually, nothing in what you presented above says or seems to indicate anyting "unusual." It is an analysis of the cell-types that the tests are seeing, and an evaluation of what the results indicate. They are using a process of elimination with each additional part of the analysis, which is what the "differential diagnosis" statement in the third-from-bottom paragraph describes.  While it is impossible to tell from this partial copy, it seems that the pathologist or radiologist (whoever is writing it) concluded that it is in fact Follicular (see "Addendum").

    It may be that your particular doctor senses something odd, but you can only find that out from him.  Ask him what he meant by the statement.  He may feel you need additional tests if this is inconclusive, but it seems that the writer is certain that he has narrowed it down.

    You will just have to find out the answers to all of this from the doctor himself.  I myself would not wait to get the doctor's answer regarding this.   There is no reason why you cannot call Monday and ask for a meeting or phone call in which he explains it to you.  I am the sort of person who bullies in and demands answers.  Politely and respectfully, but firmly.

    Cancers morph and change into other cancers all the time, sometimes under the effect of the drugs used to kill them, which is why a conclusive pathology report is critical.

    max

    .

    .

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #8
    Max Former Hodgkins Stage 3 said:

    Frankie,

    Actually, nothing in what you presented above says or seems to indicate anyting "unusual." It is an analysis of the cell-types that the tests are seeing, and an evaluation of what the results indicate. They are using a process of elimination with each additional part of the analysis, which is what the "differential diagnosis" statement in the third-from-bottom paragraph describes.  While it is impossible to tell from this partial copy, it seems that the pathologist or radiologist (whoever is writing it) concluded that it is in fact Follicular (see "Addendum").

    It may be that your particular doctor senses something odd, but you can only find that out from him.  Ask him what he meant by the statement.  He may feel you need additional tests if this is inconclusive, but it seems that the writer is certain that he has narrowed it down.

    You will just have to find out the answers to all of this from the doctor himself.  I myself would not wait to get the doctor's answer regarding this.   There is no reason why you cannot call Monday and ask for a meeting or phone call in which he explains it to you.  I am the sort of person who bullies in and demands answers.  Politely and respectfully, but firmly.

    Cancers morph and change into other cancers all the time, sometimes under the effect of the drugs used to kill them, which is why a conclusive pathology report is critical.

    max

    .

    .

    Agreed !!!

    I couldn't agree with you more about having some answers immediately. John

  • frankie402
    frankie402 Member Posts: 31
    #9
    unusual

     Ha, I was going to ask a lot of questions but I thought I better quit while I was behind and just ask one!  If extranodal means outside of the lymph system, is it normal to have the same exact cancer in an extranodal place and then in the lymph node a year later? Found this scribbled in my notes but if it doesn't make sense just disregard it!  I want to thank each one of you for helping me try to figure this out.  You are a special group of people and I feel better after talking to you.  Max, I feel better about the report, now I won't focus on it and be so anxious about it.    I have decided to call monday and ask them to write this down and fax it to me.  Hope you are all doing well!! God Bless, Frankie

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #10
    frankie402 said:

    unusual

     Ha, I was going to ask a lot of questions but I thought I better quit while I was behind and just ask one!  If extranodal means outside of the lymph system, is it normal to have the same exact cancer in an extranodal place and then in the lymph node a year later? Found this scribbled in my notes but if it doesn't make sense just disregard it!  I want to thank each one of you for helping me try to figure this out.  You are a special group of people and I feel better after talking to you.  Max, I feel better about the report, now I won't focus on it and be so anxious about it.    I have decided to call monday and ask them to write this down and fax it to me.  Hope you are all doing well!! God Bless, Frankie

    I have found reading the medical reports will drive you crazy. They never make it simple. I think sometimes one Dr. tries to out write the other in the choice of words they use. I guess if they made it in terms we could understand the report would only be about 1/2 a page. I had it happen to me several times with reports. I worried all weekend once with a 3 paragraph reading and when I asked a Dr. to break it down for me he said it's nothing, but just a normal finding. He said he doesn't even know why it was included. Of course in your case it may be different.

      As far as finding the same cancer type in 2 separate places a year later I am not sure, but guessing I would say yes. Max or somebody will have to chime in on this one. John 

  • frankie402
    frankie402 Member Posts: 31
    #11
    COBRA666 said:

    I have found reading the medical reports will drive you crazy. They never make it simple. I think sometimes one Dr. tries to out write the other in the choice of words they use. I guess if they made it in terms we could understand the report would only be about 1/2 a page. I had it happen to me several times with reports. I worried all weekend once with a 3 paragraph reading and when I asked a Dr. to break it down for me he said it's nothing, but just a normal finding. He said he doesn't even know why it was included. Of course in your case it may be different.

      As far as finding the same cancer type in 2 separate places a year later I am not sure, but guessing I would say yes. Max or somebody will have to chime in on this one. John 

    John you are so right!  I wish the doctor wouldn't have even said I was an unusual case because all i've done is worried about it.  As a matter of fact when I left there that is all I remember is that one sentence, that is why I am having so much trouble remembering what he told me.  All I know is that i'm scared enough as it is so for my family's sake I plan to stay positive and try to live like i'm cancer free and stay away from the PET scan reports!  So happy for you that you are in remission!!  Thank you for your repy, Frankie

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #12
    frankie402 said:

    John you are so right!  I wish the doctor wouldn't have even said I was an unusual case because all i've done is worried about it.  As a matter of fact when I left there that is all I remember is that one sentence, that is why I am having so much trouble remembering what he told me.  All I know is that i'm scared enough as it is so for my family's sake I plan to stay positive and try to live like i'm cancer free and stay away from the PET scan reports!  So happy for you that you are in remission!!  Thank you for your repy, Frankie

    Call Doc tomorrow

    Frankie,

      Just make sure you call the Dr. tomorrow so you know what is going on. Make sure you let us know as well.  John

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #13
    COBRA666 said:

    Call Doc tomorrow

    Frankie,

      Just make sure you call the Dr. tomorrow so you know what is going on. Make sure you let us know as well.  John

    Did you call yet?

    Frankie,

      Just wondering if you called yet and got any answers. John

  • frankie402
    frankie402 Member Posts: 31
    #14
    New Info

    I talked to my doctor and he said the reason it was presenting unusual is because the first time in the bowel last year it was not in a lymph node and this time it is.  He also said it might be systemic so I don't like that at all.  He also talked with Dr. Vose and she agreed with the plan to do a bone marrow biopsy and go from there.  He said even if it's in the marrow we still might watch and wait.  So, any input would be appreciated.  Thanks, Frankie

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #15
    frankie402 said:

    New Info

    I talked to my doctor and he said the reason it was presenting unusual is because the first time in the bowel last year it was not in a lymph node and this time it is.  He also said it might be systemic so I don't like that at all.  He also talked with Dr. Vose and she agreed with the plan to do a bone marrow biopsy and go from there.  He said even if it's in the marrow we still might watch and wait.  So, any input would be appreciated.  Thanks, Frankie

    A little confused.

    Frankie,

      Now I feel a little confused. I thought the initial diagnosis last year was lymphoma, but I may be wrong. Lymphoma is a systemic cancer isn't it, since it is in the lymph nodes. May need some help from Max here !!! BTW: I had FNHL too, but now in remission.. John

  • frankie402
    frankie402 Member Posts: 31
    #16
    COBRA666 said:

    A little confused.

    Frankie,

      Now I feel a little confused. I thought the initial diagnosis last year was lymphoma, but I may be wrong. Lymphoma is a systemic cancer isn't it, since it is in the lymph nodes. May need some help from Max here !!! BTW: I had FNHL too, but now in remission.. John

    Confused

    Sorry John!  Last year in July, I was diagnosed with FNHL in the small bowel and it was NOT in a lymph node.  This year in July I was diagnosed with FNHL in an inguinal lymph node.  Does that help at all?  I would think that if you had it in the lymph nodes it could be anywhere but when it is in the small bowel the nurse said today it's not suppose to go anywhere.  I don't know it's so confusing to me.  It's great to hear you are in remission.  I am a little worried about the systemic thing though.  Hope this helps! Frankie

     

     

  • frankie402
    frankie402 Member Posts: 31
    #17
    Dr. Report

    I asked my nurse to fax me the doctors notes and this is what he said:

    NHL, follicular low-grade type.  This has been a somewhat puzzling sequence of events.  The latest lymph node biopsy shows fewer centroblast/hpf than the previous small bowel lymphoma.  My opinion last year when the small bowel lymphoma was resected with negative regional nodes was that this was a primary small bowel lymphoma.  In retrospect now, with the involvement of the lymph node in the right lower abdomen region adjacent to the inferior epigastric neurovascular bundle, is that this is probably systemic low grade follicular lymphoma.  I would conclude this because of the fact that primary small bowel lymphomas with negative nodes are again only self limited.

    I hope this helps!!  Thank you again!

     

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